Building my life after the devastating effects of Necrotizing Fasciitis
(The Flesh Eating Bacteria)

Monday, October 26, 2015

Bearing scars, but doing well

One
week after surgery!

I'm
mostly walking without crutches. It's totally incredible. Comparing
this to my two other arthroscopic procedures, in neither of them I
was walking this quickly. Yes, it hurts all the time still. I'm only
one week after major surgery, after all. But I am feeling strong, and
feeling that I am healing every day. *That* is not to be taken for
granted! There is still strong pain- surgical pain. The incisions
still have the stitches, my muscles and thigh joint are very raw
still. But I feel strong, and I can walk on both legs. Today I
mastered going up stairs with alternating feet each step (like you do
all the time), instead of bringing both feet to one step, then the
next, etc. Amazing. Most painful are the incision spots and muscles.

Also
the joint is popping out of place a lot. I was warned that that would
be the case because there is no labrum (cartilage cup) holding it in
the socket. The end result is expected to be that the joint pops out
of the socket regularly, but I won't have pain. I can put it back
when it pops, it's just kinda oogie to think about. In practice it's
not a big deal. That is, if it doesn't hurt. That is what remains to
be seen.

I
am going back to my surgeon on Thursday (in Tel Aviv) to take out
stitches and talk about physical therapy. I am going to push for
hydrotherapy- physical therapy in a therapeutic heated pool. It works
for me well, I had it after the other arthroscopic procedures.

I
sometimes feel that it may have been wiser to skip this procedure and
just go for the hip replacement. That is what is suggested for a
calcified joint (osteoarthritis), and that is what I had, a
completely calcified joint with no cartilage at all. That way I could
have avoided yet another surgery. I am not sure why my surgeons
thought this was the best thing to do for me, but I guess that after
they went into the joint with their instruments, doing a job to save
the joint made sense. They are confident that it will get me out of
pain. I hope they are right. I just wonder if they were prepared then
and there to do a hip replacement (which they weren't- it is a
totally different surgery), if they still would have opted for this
repair procedure anyway.

I
had one very bad experience there with one of the nurses. You'd think
that in a private hospital that wouldn't happen, but wow, I am still
paying the price for her callousness.

For
18 hours after surgery, I was extremely nauseous, vomiting, and had a
migraine- a very bad reaction to having been given straight morphine.
That being the case, Robert was in the halls a lot looking for nurses
to administer anti-nausea medication. There weren't many nurses
around, and he had to ask often because they didn't do it the first
time. I was in an awful state. There was one nurse
who was particularly cold to us.

She
had me pegged as a whining patient with my husband whining for me.
(If she only knew me....)

At
some point in the afternoon the physical therapist came in to see if
he could help me to get up and moving. I was vomiting, I said no, I
just can't.

A
few hours later he came back with that nurse. It was time to get me
out of bed. But I was still nauseous and had a splitting migraine. I
told her I just can't. I have a migraine, and I'm vomiting. She said
"I haven't seen you vomit all day". BECAUSE YOU HAVENT BEEN
AROUND!!!!! It was Robert who kept giving me clean towels to barf
into and wipe my face with. Did she really think that it would be fun
for me to make up a story of how awful I feel?

I
then said that I have the catheter, and I just can't manage it all. I
couldn't manage using the bathroom all the time, I felt I still
needed the catheter (half day after surgery here...).

She
then said "so we'll take it out". And in two seconds she
whipped it out. I screamed. She said "what? That is how to take
out a catheter". I have news for you- that is NOT how we take
out a catheter. I've had a catheter at least 10 times in my life, and
never did this happen.

Somehow
I managed to get myself up and onto the crutches (the pictures from
the previous post), migraine and all. Only then, when she saw that I
gotten up and was walking did she have new found respect for me. I
told her I have a terrible migraine, and only then did she give me a
shot for that. The shot worked, the nausea and headache abated, and I
turned a corner at that point.

Right
after that my dear friend Miriam came in to visit me, and we had a
lovely visit.

That
whole catheter experience left me with a whole other problem, not
related to the thigh surgery. Yes, I am going to write this up for
the hospital on their "quality questionnaire". It just
makes me so upset that these things go on- regularly- in the
hospitals, no matter how hoity-toidy and private. I am so sick of it.
I have had so many surgeries, there should be something written in
the chart that says:

"this patient is sincere. If she says she
isn't feeling well, she *really* isn't. She's been through hell and
back, cut her some slack. Believe her. Eight years ago some nurses in
Soroka hospital didn't believe that she could possibly be in so much
pain, and nobody gave her antibiotics. Those nurses, 8 years ago,
said "she's just spoiled, she doesn't need the
pain medicine"

(that really happened, btw).

The
next day she almost died.

Smile
at her, it helps her heal faster."

That
stuff doesn't go into charts, though. The patients just have to bear
the scars.

Thanks for this article, Lee. It rang so true for me, many different parts of it. In fact, the only time that I can really remember being respected for verbalizing my "suffering" was during childbirth. Not that in my present life, including experience as a doula, I would use the word "suffering" for childbirth pains, but for shorthand sake here it works. I am going to reprint this in my blog. I don't do that much. ! זכיתה

Great post, Honey. And the end is intense. You're right: the charts should emphasize the patient's history with more than a brief list, and it should mention the patient's track record of reporting pain and discomfort that proved to reflect a serious underlying condition. Even better: How about if nurses were trained to always show sincere compassion in a timely manner to all patients without presumptuousness and without insisting that all patients have the same needs and reactions. Is that asking too much?

About me and the blog

This blog is about the hard stuff that has happened to me since I got sick... very sick, in 2007. When you read it, please know also that there is lots and lots of GOOD, amazing, miraculous things in my life. I need this blog, however, to get out the hard stuff.
That hard stuff started out with a simple run-of-the-mill surgical procedure to fix a small hernia I had. I was completely healthy before that. Four days after the operation, I was readmitted to the hospital in tremendous pain. Nobody knew what was wrong, some nurses didn't even believe my pain was that bad. Tests were done, nothing was noticed. A few days later I was taken in for an exploratory surgery to see if the source of the problem could be identified.
The next thing I knew after going under for the exploratory surgery was that I woke up many days later, from a coma, completely unable to move my body or communicate.
I slowly learned that I almost died from the “flesh eating bacteria”, Necrotizing Fasciitis. I had suffered tremendous bodily damage, but survived.
From that point on, my life has been taken over by medical problems, more diseases, many more surgeries and so much pain.
When asked what I do, I say I am no longer able to work, but I am an orchestra musician, I play french horn, and I am a birth doula. Since 2008, however, I have not been able to work.
I am blessed to be able to raise my four beautiful children and continue life with my loving husband, Robert. That is indeed my life's work. When I got sick, I was 39, and my kids ranged in age from 1 + ½ to 7. It has been an amazing, tremendously difficult journey we have all been on. I invite you to randomly read blog entries from this blog, as well as the CaringBridge blog, which can be found on a button under this write-up.
I appreciate all your letters and feedback either personally or on my blog. The support and encouragement I feel from my readers is the fuel for my writing. I thank you for joining my journey!

Contact me directly

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my blog is also here

"footbridge", by Ruth Gresser

Getting from one side to the other is where we find the colorful part of living...

People, Places & Things

Robert= husband, friend, anchor, ezer k'negdo.

Dov= oldest child, boy variety

Ya'akov= 2nd child, also boy variety

Shifra= 3rd child, girl variety

Azriel (Wazi)= 4th child, again, boy variety

Emma= my dog. We adopted her while she was pregnant (how else does a dog get to Sarah?), she had her 7 puppies here in our garden, we raised them for 3 months, and then one-by-one gave them away to new homes. We have Emma with us now, a dearly beloved part of our family.

Gapey= the large (26cm x 13cm, or 11in. x 6in.) wound on my left upper thigh/lower belly/groin after the debridement surgery took out all skin layers, parts of muscle & ligament

Scrapey= the other wound; the area all around my right thigh where the skin was taken in rectangular patches for the graft which was used to close gapey.

Shapey= the odd shape on my left outer thigh which was caused by the cellulitis infection (March 2008). It is still damaged looking, and remains sore to the touch